Shoba’s Story: A Kidney Transplant and Then Three Different Cancers

Watch Shoba’s TedX talk about her journey

The first symptom I had for my first cancer was blood in my urine.  I had already had a kidney transplant when I was 23, seven years prior to that, so I had constant follow up appointments with a nephrologist. The blood in my urine alarmed me and I rushed to see my nephrologist. Initially, like many other people, I assumed it was a UTI.  I didn’t have any symptoms of a UTI, no fever, and the test came back negative.

My nephrologist referred me to a urologist, who performed a ureteroscopy. It came back with a diagnosis of upper tract transitional cell carcinoma, or TCC. TCC is a type of cancer that affects the transitional cells that line the urinary system, including the bladder, ureters, and renal pelvis.

The treatment that I received for the TCC was removing my kidney along with the ureter, followed up with chemotherapy. I got a cisplatin plus Gemzar regimen. Because of my transplant, they were watching my kidney function very carefully and after a couple of cycles, my kidney couldn’t handle the cisplatin. So, the doctors changed my treatment to carboplatin and Gemzar.

I recovered from the TCC and seven years after that, I was diagnosed with bladder cancer.  They found it just during a routine cystoscopy.  My urologist saw a one-centimeter tumor in my bladder, and this was discovered only because as someone who had a prior cancer, I underwent routine checkups.  Since the tumor was smaller, I had a TURBT and the doctor removed it. This was followed up with intravesical chemotherapy using mitomycin.  I was ineligible for BCG because I required immune suppression for my kidney transplant.  

A couple of years after being diagnosed with bladder cancer, I was diagnosed with angiosarcoma in my liver. This was discovered during one of the routine MRIs that I received as a follow up from the two prior cancers. The doctors found a small lesion in my liver, and at first, we thought that the bladder cancer had metastasized. In fact, the doctors didn’t do a biopsy and just said, “Okay, let’s remove it.” I then had surgery to remove the lesion in my liver.  The pathology report said it was angiosarcoma. Angiosarcoma of the liver is a rare and aggressive type of cancer that originates from the cells lining the blood vessels within the liver. So once again, I had to undergo chemotherapy.

Having three different cancer diagnoses was challenging and I had my moments of “Why me?” Every patient goes through that, right. So “why me?” was always the question haunting me. Especially after my second cancer, I was feeling very badly about it. I was constantly researching and found the cause for my cancers was because of the Aristolochia Indica herb which I used to take from childhood, to treat a skin disorder.  It is a suspected carcinogen and can also lead to nephrotoxicity.

The angiosarcoma really got me feeling down because it’s a very rare and aggressive cancer. I never got angry. But I became sorrowful and depressed at times, but then I think things have happened and now I can’t do much about it. I just have to look forward what I can do, to keep myself alive.

I think having undergone so many things, I came to a point in my life where I said, “Okay, I’m not worried about death. I’m just a spec in the universe. It’s okay. I can live with it.” The Earth is 4.5 billion years old, and I’m just a tiny speck. We all are born, and we all have to die someday. So that kind of gives me some sort of solace when I feel like I’m really not that significant in the overall big picture. I try to work out things logically as much as possible. I’m an engineer, so I always think like that. 

My husband Suresh has been my pillar of strength. We were both navigating it together and went through all the emotions, but he was there every step of the way. In fact, in my book, “My Race Against Death”, I share many of the lessons that I have learned like those that follow.

First, I would tell other bladder cancer patients that it is so helpful to have someone in your corner. In my corner, I had my husband, my mother and some friends here who are like family, and I think that’s what helped me sail through these times.

Second, I would also advise other bladder cancer patients to be their own advocates, and always consider getting a second opinion. Try to understand exactly what treatment you are getting – the medicines and everything about it.

Third, which I say in my book, is to know that you are not your disease. Don’t let bladder cancer define who you are. Don’t let it overwhelm you. Keep living life. Yes, the cancer is there, you have to fight it, but just keep living life to the fullest.

Fourth, make a plan. Plan how you want to fight the disease, how you want to talk to your doctor, how you want to get through the whole thing. It might be BCG treatments, it could be surgery, it could be something else, chemo, or whatever. I think the fear of the unknown is worse than fear of knowing what you are going to be going through. Understand what your cancer is, understand what the treatments are, talk to the doctor, note it down, make a plan, and don’t let that define you.  

Lastly, have somebody in your corner. Sometimes people are alone. They may really not have family to help them. That’s why groups exist like BCAN.

If I remember correctly, BCAN started somewhere in 2005 and my first cancer was in 2004. I remember when BCAN formed. I remember being part of BCAN, and I know you have Walks to End Bladder Cancer for raising funds. I think my oncologist does the Walks.  So yeah, I always follow BCAN and I know you have a podcast as well. I have listened to that couple of times.

I do remember that back in the day, BCAN was very small. Because of all my other cancers I had lost touch with BCAN and I was not following them. And then I found BCAN again after some time and said, “They seem to be doing a lot more than before.”

It’s always good for cancer survivors to hear stories and especially when they hear survivor stories. When I was listening to a podcast the other day, BCAN’s podcast popped up and I said, “Oh, wow. Now there is a podcast. That means they’ve really grown.”  

Shoba’s book, “My Race Against Death” is available on Amazon.